Horizons Specialized Services: Little Points of Light

The nursery was painted and car seat installed: We were ready. On Nov. 20th, 2017, we welcomed our first child, Grady. After 10 years of marriage, we’d waited a long time. But nothing prepared us for: “There’s something wrong. Your son needs to be transferred to another facility.”

Within 24 hours, Grady was flown to Children’s Hospital. Though he seemed healthy, doctors diagnosed him with esophageal atresia/tracheoesophageal fistula, tongue tie, a single kidney, 13 pairs of ribs, and a tethered spinal cord. At three days old, Grady underwent a four-hour surgery. He remained in Children’s NICU for 36 days. I was at Grady’s bedside. Shawn was home on weekdays to work and traveled on weekends to be with us.

Throughout my pregnancy, Grady always measured a week small, but doctors couldn’t determine why. With additional monitoring in Denver, tests never revealed just one kidney or associated symptoms. Grady’s upper esophagus didn’t connect to his lower esophagus, which connected to his trachea. His tongue was tethered to the floor of his mouth, which could affect swallowing, eating, and speaking.

Home from the NICU, Grady started physical therapy. Having spent his entire life in the hospital, his motor development was less than that of a newborn. While other babies were experiencing tummy time and exploring sensory stimuli, Grady was recovering from invasive surgery requiring him to be on a ventilator, have a chest tube, and brave X-rays, upper GI studies, IV nutrition, and IV narcotics.

We endured weekly weight checks with the pediatrician, an esophageal procedure and subsequent stay at Children’s, an ER visit for a perforated esophagus, and two more surgeries (one to place a feeding tube in Grady’s belly). The pain from the esophageal perforation caused Grady to stop eating by mouth.

We used terms like possible neurologic impairment due to spinal cord tethering, oral aversion, debilitating reflux, and nasogastric and gastronomy tube insertions. We felt stuck in a hole, surrounded by diagnoses. Once we connected with Horizons Early Intervention team, we spent less time with doctors. Horizons helped us dig ourselves out of that dark hole. We looked forward to focusing on what Grady could do rather than what he couldn’t.

When Jodi Glaisher, Horizons Occupational Therapist, met Grady, he had low muscle tone. Babies with core complications tend to draw into center. We’re developing Grady’s ability to rotate for balance and mobility. We’re working on sipping, tasting foods, and creating positive associations between hunger, food, and comfort. Jodi gives us at-home exercises to make progress faster.

Our goals for Grady are to continue gaining weight and feeling comfortable eating food regularly. We still travel to Children’s for esophageal dilations, and we’re followed closely by Pediatrics, Pulmonology, GI, Nephrology, Urology, and Neurosurgery. Horizons Family Support program helps us pay for travel expenses and medicine not covered by insurance, making an unbearable situation more bearable.

Grady just celebrated his first birthday. Reflecting on our year’s journey, I was blindsided by emotions — anger, pain, hope, fear, joy, and love. We’ve been continually tested, but our story is one of resilience. We’ve learned the dance — three steps forward, one step back. But always moving forward.

— Lauren and Shawn Tompkins

Horizons Specialized Services works in partnership with families and communities to expand opportunities for individuals with, or at risk of, developmental disabilities. To donate to Horizons Little Points of Light Campaign to support Early Intervention and Family Support, visit horizonsnwc.org or send a check to Horizons LPOL, P.O. Box 1483, Craig, CO 81626.

I spent this past Saturday morning preparing for Sunday’s lunch branding — at least what I could get done early. I cooked pasta and boiled eggs. I made a gelatin salad. I decided to bake a banana cake, a family favorite, for dessert.